Upcoming Surgery

It's crazy how fast this summer is going by. We had so many plans of things to do before Jake has his surgery on July 11th, and now we only have one week left. We did manage to have some fun this weekend with putt-putt and a great bike ride around Aurora Reservoir. We're already making plans for things he can do in his wheelchair after surgery so he can get out of the house.

With surgery just a week away, I think the reality is really setting in with Jake. He was asking a lot of questions at dinner tonight, the big one "Why don't I have a choice?" That's a tough one to answer. As we explained to him, for most everyone surgery is not a choice. Something in their body isn't working the way it's supposed to, and there generally aren't any other options. We don't really want to do this either but if the surgery will help get his foot flatter and make walking easier, it will be good in the long run and a tough decision we have to make. 

He is having three different procedures: A tendon transfer, which will split the tendon that runs along the instep and move part of it to the outside of the foot (this is due the tightness in his foot that causes it to rotate in). His heel cord is too tight so they are going to release it. And finally a heel slide where they cut his heel bone and move it over so his foot gets in better alignment. 

Post surgery, he'll spend six weeks in a cast, with three being non-weight bearing. That's going to be interesting since we live in a multi-level house with a lot of stairs. :-) He's supposed to be able to walk on it after three weeks, so we'll see how it goes. 

Right now our focus is staying positive about how much this should help and trying to keep him from being too nervous. Would greatly appreciate some extra prayers for a successful surgery. 

Summer Camp at Roundup River Ranch

We took Jake to camp on June 8th and he got back this past Monday. He was excited to go in the days leading up to camp and even took the news he couldn't have his phone to listen music pretty well (listening to Rush is what he does when he's chilling and needs to recharge).

We got to camp, got him checked in through the medical team and then headed to his cabin. When we were getting ready to leave, I think reality set in that he would be there for six days on his own and he got a little emotional. I had to leave the room because I was on the verge of losing it and didn't want to make things worse. The counselor noticed what was going on, reassured me it was normal and then got Jake engaged in a game. We said our goodbyes and left. I'm so glad Todd was able to go up with me to drop him off because I was a bit teary for the first part of the drive home. While I had complete faith and trust in the staff at the camp, it was really hard to leave Jake. I had so many thoughts going through my head....Would he have fun? Would he make some friends? Would he ask for help if he needed it? He was on his own for the first time since his stroke and didn't know a soul. We are so tuned into when he needs help with something and these people didn't know him, add to that he doesn't always ask for help when he needs it.

It was so strange not having him home, he is pretty much always here. He doesn't go to friends houses very often or to sleepovers like Luke, so his lack of presence was really noticed. Luke commented more than once how quiet it was with Jake gone. I tried to keep busy, but found myself often wondering what he might be doing at that moment or if he was making friends. I broke down emailed the camp recruiter on Friday to check in. She said he was being a little shy and quiet around the other kids but was really enjoying the activities and had just got back from archery. She also said he was drumming that night for "stage night." Nothing she said surprised me, but it was so reassuring to know he was ok rather than wonder.

Jake had decided before he left for camp that he'd ride the bus home and we picked him up from Children's Hospital. (The camp is about three hours away from where we live).  Luke and I went to pick him and I had so much nervous energy waiting for the bus to arrive. It's truly a different experience picking up a child when he's been to this type of camp. It wasn't your typical all the kids unload in a free for all and find their parents. First, there were eight wheelchairs unloaded, all the luggage, three big tubs of medication and an oxygen machine. It gave me a whole extra level of respect for what they do to make camp possible for these kids. We had to get in line, show an ID, give our PIN and sign our kids out. Then they gave back any unused medications and finally called your child to get off the bus. I was so thankful we got there early and only had to wait behind three other people, I needed to see Jake! It was so good to lay eyes on him again.

He said he had a good time and would want to go back again. Success!! He didn't really make any friends, but honestly that didn't really surprise me. It takes him a lot longer now to connect with people and with all the activities they had going on, there just wasn't enough time. He still enjoyed himself and got along just fine. He's been a little more self-sufficient since getting home which is cool to see. All in all, I am so pleased things went well and can't wait to go as a family in October.

Surgery, Bike Rides and Camp

There is nothing quite like having to tell your son he needs to have foot surgery, that was an emotionally draining conversation. We decided not to get into too many details at this point and presented the big picture, then let him ask questions. Just knowing he is having surgery this summer and will have issues walking for awhile post surgery was enough to digest. Just knowing what he did and that he'll be losing almost a month of summer left him pretty upset. It was really important to us to let him feel he had a say in this and make decisions as appropriate. He decided not to do his intensive PT in June that we had planned since we'll be doing so much therapy post surgery. We also talked with his rehab doctor on Thursday and opted not to get botox in his leg this time. He would only have the benefit of it for a month before surgery, so why put him through the shots. We really hate to have his surgery in the summer, but the alternative of waiting until August would present so many more challenges and require him to miss the first couple weeks of school. 

On a much lighter and happier note, we did our first "official" bike ride today!  It was Elephant Rock in Castle Rock will several different rides to choose from all the way up to 100 miles, we choose the 8 mile family ride. After a slightly bumpy start with a flat tire that had to be repaired not once, but twice, we had a great time! It was such a beautiful day with the route going along this really nice path. We got to ride with Adaptive Adventures which was also cool, they had about 11 people participating today. The boys did great, but Jake was pretty wiped out by the time we were done. 

Jake heads off to camp at Roundup River Ranch on Wednesday. He's getting pretty excited and we've been talking a lot about all the great stuff he'll get to do. I think it's going to be such a good experience for him. It will be a long six days here wondering how things are going but I'm sure Luke will keep me busy.

Three Year Anniversary

On the eve of Jake's three year anniversary of his stroke, I have a hard time believing three years have already passed. There are things I can remember about that night like it was yesterday. Others I don't remember at all until I go back and read them here. He has come so far since May 31, 2013...

I was going through some pictures the other day looking for something from his 4th grade year and started going through all the video and pictures we took in the hospital. More than one tear streamed down my cheek, he was in such bad shape. I have people ask me how we got through those three months in the hospital and it was literally one day at a time. I do remember making a very conscious effort to focus on what was happening that day and forcing myself to not get overwhelmed with all the "what next?, what if's?" that would pop into my head. There were so many unknowns and the only way to not make myself crazy was to celebrate the small victories each day and not worry about what was coming tomorrow, next week, next month, next year.

This past year has presented some new challenges in his recovery. The biggest being his growth spurt. I've talked about this off and on and the impact it's had on his walking. When I think back to last July when he was starting to walk more and more without his leg brace and how well he was doing, the difference is pretty shocking. The botox isn't lasting as long or is as effective which brought us to take him to the Gait Lab at Children's a few weeks ago. Tuesday Todd and I will meet with the doctors and PT's to go over the results and discuss the options of where to go from here. I have a feeling I know what's going to be recommended and it's not going to be an easy road...I'll share the outcome of our meeting in the next blog.

Jake finished 7th grade on Friday. A couple of weeks  ago he was chosen to receive an award at the annual middle school awards night. (You may remember he got recognized for band last year at the same ceremony.) This year, he was honored for his efforts in Math. It was kind of funny, after the ceremony, he said to me "I'm not sure why I got the award for Math, it's not my best subject." I explained to him that the award wasn't about who has the best grades but about how hard you try and the effort you put in. I talked to his teacher a few days later and she told me that he consistently participates in class as well as group work and just doesn't give up. I truly believe his persistence is a big part of why he's come as far as he has in his recovery.

All in all, it's been a good year. Jake has continued to make progress albeit a bit slower, but we're told that's normal. I tried to cut back on the support I was giving him with homework and staying on top of things. There were still times that assignments didn't get handed in or he needed reminding to check in with teachers, but from what I hear from some of my friends, that's typical for a 13 year old boy. :-) We still encounter new obstacles every so often, but seem to find ways to overcome them. I think this next year present a whole new set of challenges...it will be his last year of middle school and decisions will need to be made about high school. I also suspect his growth spurts will continue to hinder his overall muscle tone.

Bottom line, we are so incredibly proud of him and feel very blessed.

Gait Lab

Jake had his appointment for his gait analysis on Wednesday. It was a really long appointment and he was exhausted by the time we were done. While he spends time outside of his leg brace on a daily basis, it's for pretty limited amounts of time, and this was the most he's had to walk without it.

On Wednesday, he had to do several laps back and forth so his walking pattern and muscles could be measured. He had a pretty lengthy exam where we talked about different things we've done for treatment, then they took measurements and checked the bending/flexibility of his knees and ankles. After that, the hard work for him really began. Due to to the significant difference in his walking with and without the brace, they decided to film him both ways. He had reflectors attached all over his legs and on his hips, they bounced off lights in the room and were captured on film. He also had electrodes on several points on legs which measured what the muscles were doing. We were told this is the same technology used in producing animation in films. If you watch the video below, about half way through you'll see how much his left foot rolls out to the side and how he can't get it flat. He doesn't do the traditional heel then toe walk with that foot that most of us do. (Sorry for the choppy edits, he had to be shirtless due to the hip reflectors and I was trying to just focus on his legs).

The final piece was a very thin wire was inserted into his calf muscle so they could get even more precise measurements of how his muscle is reacting when he walks. He wasn't a huge fan of that, but was a trooper.

The team that will meet to go over the results will include his PT, rehab doctor, orthopedic doctor and the PT who did the analysis will review all the data to make a recommendation on what to do moving forward. We won't hear back for a few weeks but are very hopeful we'll get direction on how to best help him.

A Hectic May

I feel so lucky on this Mother’s Day to have been blessed with two amazing boys. I truly couldn’t ask for better kids, we’ll see if that sentiment holds as we head into teenager years. :-)

We got an early start to summer fun this past Thursday when we joined Adaptive Adventures at Chatfield Reservoir with some kayaking, sailing and rock climbing. It was one of those bittersweet moments watching Jake on the rock wall. He was trying so hard to propel himself up the wall but he just didn’t have the strength in his left arm to pull him up. One of their volunteers got on the wall to help him...it was so impressive at how good she was at giving him extra support while hanging on the wall herself so he could keep going. While this is happening, Luke went up and down three different sections of the wall. Seeing how easily he was able to do it while watching Jake struggle so hard to just get up one section was one of those gut wrenching moments. I hated that it had to be so hard for Jake, but at the same time being so proud of him for continuing to persevere and make it to the top. We are really looking forward to doing more with them this summer.

In addition to our normal day to day stuff, Jake has a lot going on the next month. This coming Wednesday, he is going to the Gait Lab at Children’s Hospital. I talked about this a few posts ago when we were in the process of trying to get a referral. I am hopeful that we will get some really good information from this so we can figure out if there is a better way to help his walking. We won’t get their findings for a few weeks, but I’ll post an update next weekend on how the lab itself goes.

He's also has his first overnight camping trip next weekend with boy scouts, along with Todd and Luke. The following week he is getting an award at the middle school awards night. Last year he was chosen as outstanding band member for 6th grade which was such a cool thing for him. We don’t know what he is getting this time but I’ll be sure to let you know when we find out. Then he finishes 7th grade at the end of the month and has his 3rd year anniversary post stroke on May 31st. So hard to believe it's been three years... 

Finally, and probably the one I am most proud of, Jake is going to summer camp at Roundup River Ranch on June 8th! We went last fall for the family weekend and had such a great time. Ever since, I have been hoping he would go to the kid’s only version this summer. We’ve talked about it off and on over the past several months, but he’s really been on the fence if he wanted to attend. He got accepted about a week ago and told us Friday night he wants to go. His independence took a huge step backwards after his stroke, and for him to decide he’s ready to go away by himself for 6 days is a HUGE step. His only overnights without us in the past three years have been with very good friends or my mom and dad. The camp session he's attending is for kids with a neurological disorder, so I’m hoping he can finally get the chance to connect with some other kids who might be dealing with similar issues. As with most summer camps, there is no communication, so it’s going to be really hard on me, but I know it’s going to be so good for him. The staff is trained to deal with kids who have medical issues and he really couldn’t be at a better place to get the support he needs while away. If only they had that same kind of support for the parents who are at home. :-)

Vacation

You know it's been a good vacation when everyone is bummed to come home. None of us were ready to return to real life after being in Puerto Vallarta for 8 days.

It was so cool to see how much more adventurous Jake was on this trip as compared to two years ago. Last time we went he initially required a lot of coaxing just to get in the water, and Todd or I would need to stay pretty close to him while in the lazy river. He was so cautious and hesitant back then (understandably so). This time he was in the pool the first morning and was often the one initiating laps around the lazy river or rides down the water slide. Luke was quite a fan of flipping people over in their inter tubes and Jake didn't freak out when it happened to him. It was so cool to see how far he's come and being more comfortable and confident in the water. He even went parasailing, which to be honest freaked me out a little while he was up in the air. I was a bit worried he wouldn't be able to pull the rope when it was time to come down, but he handled it like a champ.

His stamina has improved soooo much. It's sometimes hard for us to see a difference from day to day, but when we looked at how he did last time we were in Puerto Vallarta compared to this time, the difference was remarkable. The resort is huge and there is so much walking to just get from one place to another. We did use the wheelchair a few times and had the boys trade off (Luke wore his walking cast everywhere except the pool) just to reserve their energy, but the chair spent a good portion of trip parked in our room.

Much to Jake's delight he officially passed me in height on this trip. We were both barefoot standing next to each other in front of the mirror when I realized he was taller than me. It's so rare that one of us doesn't have on shoes to truly confirm who's taller. Yes, I'm only 5'1", so I knew it was coming, but it was still a bit sad, there's no denying my little boys are definitely growing up. I think I need to go shoe shopping and buy more heels!

We had such a good time...lots of relaxing and quality family time. I feel so grateful we had the opportunity to get away together as well as a great comparison for how far Jake has come in the past two years.